H

Had results today from biopsy on tonsil and now know its cancer, its all been really quick what with scans and hospital visits so not really had time to think about it now it's just starting to sink in but I'm pretty positive, I'm told its spread to a lymph node has anyone else had this 

HiAli

I am sorry to hear your diagnosis, but the first thing I would say is there is always hope. Al my friend here has the same and is currently undergoing all the treatment. He is having a six week course of radiotherapy and chemotherapy over most of the week meaning daily trips. The first thing they have to do is make sure you have no teeth that will get corroded by treatment so need removing first,. They then measure you for the mask this apparently is quite comfortable. They then arrrange the neginnings of the treatment. It will not be easy so you will need a good support system around you - family, macmillans, friends especially when you have down days. Some people loose taste buds during treatment some can find swallowing hard but if you look back on our talks there are mouth exeercises to do. 

Find all the exciting food things you love that are highly flacoured and stock up you will need to keep your weight up and need things that are exciting to make you smile. 

good luck i am here is you want to talk. 

stay strong x

Morning 

hope everyone is ok this morning. 

very windy today and glum but still no rain. They say we should have some later but not convinced so may have to water the garden.

mini mafia was quiet last night hubby says they are definately having a government meeting about the situation and i could swear i saw one dashing across the garden yesterday. i found a hole they had eaten into next doors fence to get through have to work out how to close it up. 

Bought a new harness for pedro yesterday with a front lead so basically you attach the lead at the front and also at the back which helps you control the dog and teach him proper walking. Pedro can walk nicely but he is reacive with other dogs. this is used by one of my behavioural friends so i thoiugh we would see if it worked with him. he retalliated! i put it on him - no problem looked really smart then decided to walk him down the road a little to see. we got to the end of the drive way and he sat down refused to budge!!! can you imagine trying to move a 37kg dog ? he had those dolful eyes that turned stubborn. it tookus a while to move anywhere!!! we will have another go later. 

Rolo decided to wake  me up as usual last night so his paw came out to pat me on my face then when i refused to budge the claws came out and suddenly pain! a claw dug into my cheek - blood everywhere. little B....... !!! then now he is as cuddly as pie 'i love you mummy' !!!

did not get to finish wall yesterday so will try again today. 

have a good day 

keep smiling x

Hi

Sorry its been a while I do my posts and emails on a kindle I'm a technophobe lol I don't have a fancy phone and managed to leave it in Gary's car yesterday so only just got it charged, how did you get on with Pedro Elona did he let you walk him on the second attempt, sounds like your not taking it very easy hope your feeling well and not overdoing it although the fireplace sounds like it will be lovely when its done I love all the original features so I would be itching to get it done to. Mini mafia are definitely hatching a plan be prepared it may be the calm before the storm and grandma may lead the troops to make sure there's no fisticuffs in the ranks lol. Only a few days to go till treatment getting a bit nervous more that it might not work but trying to put them thoughts aside. Hope your ok Al and on the road to recovery hope the lovebirds are doing ok 

Take care Alli x

Nearly forgot I think we have got all the rain Elona we had a bit yesterday but today its been torrential and windy to, hope tomorrow s nicer maybe you might get some rain soon it's certainly gave the grass and plants a good soaking x

Hi Elona :happy:

OMG!  I, and I am sure others, enjoy reading your 'blatherings'.  They are a much needed relief from the trials and tribulations of living with cancer.  I couldn't imagine this thread without you, actually this thread would no doubt have finished weeks ago without your wonderful, thoughtful posts and replies.  You may not be living through cancer, but you did go through all the tests, biopsies, witing for results etc.  And the end results may not have been cancer, but the stress of the wait was the same and they did diagnose you with a life changing illness.  So many people go through tests for neck cancer to be diagnosed with something else and they need to be able to read posts from beautiful souls like yourself who have also been through the same.  You have certainly helped me through this, for which I will never be able to thank you enough.

Well I've had a very quite Bank Holiday.  The weather has been rubbish so just been rattling around the house finding things to do, we even ran out of disasterous disaster movies to watch.  The good thing is the plants have had a very good watering from the heavens.  We had 50mph+ gusts down the valley last night, lights flickering.  Sounded like a freight train, a few trees down and many pubs lost their parasols etc.  We will be venturing out to put bits of the back garden back together today, fortunately no damage just things where they shouldn't be.

I was thinking about, amongst other things, the lack of being able to post pics here.  And was wondering what the interest would be in starting a private Facebook neck cancer journey group.  People would have to ask or be invited to join and only members would be able to see and write posts, comment etc.  What do you think?

I'm eating a bit more normal food each day, I even had a Happy Meal burger on Friday!  No sauce and couldn't eat the chips.  The most amazing thing was yesterday a few sweet taste buds started working!!!  All looking good to having the tube removed before the 15th.   Only eating around 500/600 cals a day at mo, so still having to top up with the tube feeds.  But heading in the right direction :happy:

Right I'm off to put the garden back together.

Be strong

Al' x

Hi Alli :happy:

I think I had my tattoo on the day that they set up the radiotherapy machine.  Throat is still painful, but improving daily.  Slowly eating more normal food each day, only around 500/600 cals at mo.  Still having to top up with tube, but heading in the right direction.  I'm having days of energy, seems to be a pattern at mo of one day completely fatigued and sleeping a lot and then two days of relative energy.

I am both slightly nervous and excited about the prospect of baby Love Birds.  It's not uncommon for first time parents to have issues.  If this happens the babies will have to be hand reared which is a lot of work.  Hand reared however do make better pets and do well as single birds.

I was thinking about, amongst other things, the lack of being able to post pics here.  And was wondering what the interest would be in starting a private Facebook neck cancer journey group.  People would have to ask or be invited to join and only members would be able to see and write posts, comment etc.  What do you think?

How are you feeling with regards to treatment starting this week?  Do you know what chemo you are having?  I had cisplatin.

Hope you have a great day

Stay Strong

Al' x

Afternoon, but late today man delivered compost for garden and Pedro wanted attention. 

He was abit better yesterday on his new front lead harness but did put the brakes on in the new estate. I think it ws actually due to the high winds that spooked him. He is now resting nicely curled up next to me unawares that he will have to try again later! the front harness did work though it did make him walk closer to my side than before which was good. 

Thanks Al for your kind words I needed them. 

I think facebook maybe a good idea but i would check with the administrators first that they woulod not sensor ths pictures. They have been a bit daft recently with some of the things they are not allowing. I have made harmless comments and they have been denied. The other thing would be to ask questions to the people who want to join otherwise we could get anybody. The other thing is as administrator unless you want someone else to also do it have you time and energy?

AM thrilled Al that you are eating and 5-600cal not bad start and a burger lol what a start!! I find some things still get caught in the back of my mouth on occasion so this may always be the case now. Hope the pain starts to ease soon. 

Alli try not to get too nervous about thursday we will all be thinking of you. I am sure hopefully all will go well. Try as many distractions as possible beofe then. 

Mini mafia junior was out again in the carport last night we suspect he has been left there on guard to report back with any changes until the time has come for their retalliation. Grandma will certainly have a say in what happens. 

Al it will certainly be exciting to see baby love birds sounds like you have had experinece with them before. They are beautiful birds. 

Boy it sounds like we have all had the wind. It certainly has been singing its way through my garden and lifte a parasol here too - not far thankfully but shows how strong it can be. Bet it was bad down in Wales. Valleys do seem to get the wind gusting through. Have not cheked on my plugs yet. At least the sun is trying to shine through. 

yay finished the wall and painted the window this morning so floor to finish now then fire place and coving lol. Will be good to get that done. One bit at a time lol. 

have found a foreign disaster movie called the wave on Amazon pretty good. (norwegian i think about a flooding). 

keep smiling and have a goo day x

Hello

Al that's great news that you are starting to be able to eat again I hadn't realised that tastebuds could come back so soon so it gives me hope, haven't had a McDonalds since before the lockdown so will maybe be able to have a big Mac when all this is over if I can open my mouth wide enough that is( I'm sure ill find a way lol). Sun is starting to come back out again so have retrieved the recycling that was strewn all over garden only one casualty one of my green bunny garden ornaments lost an ear but I managed to glue it back so he's nearly as good as new. Good news that Pedro's getting used to the harness Elona, it sounds like your going to have the room done in no time just don't try to do to much. I don't go on Facebook Al but if we could sort it I'd give it a go. Im not feeling to anxious at the mo I've been keeping busy  doing cleaning and jobs around the house and yesterday the kids set the tv up in my room and I can get catch up on it so I may get so comfy in there I won't  want to come out

Take care and enjoy the rest of your day

Alli x

Hi Al

Forgot to say the chemo drug I'm having is called carboplatin, they are giving me this as I am partially deaf in one ear and have tinnitus so some chemo can make it worse according to doc x

Afternoon, 

raining nicely here - good plants still need a lot, even the little plugs i have just transplanted this morning. Its good to see that i have not killed of all the plugs lol. 

Rum tum managed to scare of the pigeons from the bird table today he gave them such a fright poor things hope they come back later. Birds cannot see glass so they must have thought t=he was just about to get them. Mind you they are fat so they could do without a feed now and then lol. 

Gandapa mini mafia is going senile! he thought the fake funeral procession was a marriage and started doing a jig on top of the coffin. He then got incredibly drunk he got into Aunt Agathas bed who was not amused. Grandma gave him a right talking to but he just laughed it off. Consequently the whole protest turned into mayhem and nearly everyone got drunk falling over each other laying around showing their tummies and long tails caught up uin each other that when they stood up they fell over again. no wonder the plan has not been decided yet they are still suffering and untangling each other. The two on look out Junior and cousing are not amused having to miss out on all the fun. Grandma told them that until they are old enough to be their own bosses they have to follow the rules whether they like it or not. 

Glad Alli you managed to clue the ear on your garden bunny. Thankfully we did not get any damages, but the garden is at the moment quite a mess having taken down the old chicken coop. A skip arrives tomorrow so we should be able to get rid of a lot of rubbish then. Hubby will have to help. We have a plan he carries things on his lap and i wheel him it works well. some of the larger things like the chicken coop and run i may have to get a neighbour to help. THe one good thing about being ill this year is being able to do the house and garden lol. It amy take four times as long but i probably would not have been able to do if i was still working. 

how are your plants Al.

Pigeon is back for second attempt this time Rasputin has his eye on him - stupid cat he cant get him either!!! 

take care all keep smiling x

Hi 

I love the mini mafia stories Elona they make me smile, looks like you have the rain now hopefully without the wind, I know what you mean about the wood pigeons they are so greedy they never stop eating they are so big when they are on the bird table no one else can fit on lol, 2 new visitors a magpie and what I think was a blue *** which was exciting. Hope you are ok Al and still managing to eat more solid food how soon did your taste change when you were having treatment, I've bought more soft food today so think I will be ok. I'm having a rest now been cleaning for 2 days and im shattered I've been getting breathless lately which is a scary sign trying not to worry, treatment tomorrow I think im as prepared as im going to be. Don't overdo things in the garden Elona good idea to get neighbour to help 

Enjoy your day

Alli x

Hi 

I love the mini mafia stories Elona they make me smile, looks like you have the rain now hopefully without the wind, I know what you mean about the wood pigeons they are so greedy they never stop eating they are so big when they are on the bird table no one else can fit on lol, 2 new visitors a magpie and what I think was a blue *** which was exciting. Hope you are ok Al and still managing to eat more solid food how soon did your taste change when you were having treatment, I've bought more soft food today so think I will be ok. I'm having a rest now been cleaning for 2 days and im shattered I've been getting breathless lately which is a scary sign trying not to worry, treatment tomorrow I think im as prepared as im going to be. Don't overdo things in the garden Elona good idea to get neighbour to help 

Enjoy your day

Alli x

Hi Alli :happy:

Thinking of you today.  With the chemo all you can do is sit or lay back and relax (sometimes I was given a very comfy recliner chair or a bed).  The drips are plugged into the mains and on wheels, but you can unplug them to stretch your legs or use the facilities (one of the nurses should show you how to do this).  Then once unplugged you learn to dance with your drip, Strictly will have nothing on you by the end :happy:

Both Chemo and Radio can affect your taste buds, taste receptor cells.  I had my chemo over 6 weeks and it was around week two that I noticed changes with my taste.  Once my taste started to change I lost it very quickly, within a few days, all taste was definitley gone by the end of week two.  It wasn't just the taste, textures of certain foods became difficult to eat too, this was due to changes in the saliva.  Not everybody has such drastic changes to taste.

I have been very naughty and not used my tube for two days now, this is not what was discussed with the dietician :devil:  My thought was to make myself very hungry by not having tube feeds.  It worked as I ate my first full size dinner yesterday, two lamb chops and roast veg.  I am starving now and it is only 8am, I have been having a slice of toast with butter in the mornings but today I am going to try porridge.  I've not been able to eat porridge since I lost my taste.  The hardest part is getting all the right vitamins and nutrients which the tube feeds supply.  I may even remove my tube at the weekend. 

Try not to think about losing taste, it may not happen.  Or you may just lose certain tastes.  If you do notice it happening, or you start to struggle with certain food textures tell your dietician.  There are mouth washes that they can give you to help and they do help.  Also a loss of taste can affect your weight.  Some chemo can also affect your appetite, again if this happens tell your dietician.

Most of all relax today, we are all thinking of you.

Stay Strong

Al x

Hey Alli. 

Best of luck today. Alot of things will be overwhelming. Both me and my other half were in tears on the way. Its a scary experience of the unknown that you're embarking on. But remember. There's People out there in your Hospital to help. No question is too much for them.

Before you know it you'll be at the end of it and on the road to recovery.

It seems forever away but you Will get there!

Hi Al

Glad your getting to eat more food and the feeding tubes out your sounding a lot better. Was such a long day yesterday didn't get home till 7pm the mask was scary hoping today's better, felt a bit weird last night a bit shaky and headachy but slept ok and feel a bit wobbly today but not to bad, round 2 today

Take care

Alli x

Hi Sam

Thank you it was a long day and was glad when it was over,  not feeling to bad a bit shaky and tired but not sick I've took an anti sickness just in case, hope your ok

Take care

Alli x

I'd definitely say take them even if you don't. 

It's alot easier to stop sickness before it starts by having a good amount of meds in you.

TC

Sam

Morning 

What a lovely surprise to hear from you Sam glad your doing ok and last of treatment finished. Hope things settle quickly for you and swelling goes down and eating eases. 

Alli glad you have day one over and done with I expect sometimes that is always the hardest. Hope the unusual sensations settle and you are ok today. 

Al fantastic news you have the ng tube out hope you are now eating ok. I am so pleased have you all in my thoughts constantly. 

My plants are being transplanted but not in garden yet either due to the unpredictable weather cannot be trusted with all the hard work growing the plants in the first place. Did order some more bedding plants yesterday for £9.99 for 72 garden ready plugs Suttons so hopefully i will have loads of colour this year have the need for colour lol. 

Today the skip is here so hubby and i are going to try and move items into it little by little., Thankfully the end comes down so it makes it a bit easier getting the items in. 

Hubby informed me of mini mafias family tree this morning he had been doing a bit of geaneology and it trasnpires that they come from France, Germany, Russia so they are planning a multicultural party late summer when travel bans have lifted. Should be a ruckus! The worry is if they invite the American cocodiles as well !

Well caught up with a good friend i have not seen for ages on the phone today. Had a lovely conversation hoping we can catch up properly some day. She owns a GSD x Malamute who used to love walking with Shugs and Pedro. 

hope everyone has a good day 

keep smiling x

Morning and a lovely wet weekend! 

so glad the garden is getting watered and i have an excuse not to do much as back is aching from filling skip yesterday/ I got a text from some people at work saying they are coming over to see me next saturday so really looking forward to that but also worried place will look a real mess. Put up the watering can it looks quite good just a shame the lights were not long enough for where i wanted them to go. You can get fountain lights which would be better ( i9 had curtain lights) but they seem to be only solar powered which i did not want. I also suggest if any one tries this to use a plastic watering can as the nozzle is further up the can neared the top. I tried with a metal one and it was impossible to get the lights down the nozzle. 

I have also finished the floor finally in dinning roomarea wow that has taken ages!! Hopefully get some things back to normal. 

Having a relaxful time this afternoon mexican on the hob and lying on bed with bengal boys and pedro watching Ghost wars on Amazon with Meatloaf in. He actually is a good actor as well as singer. If you like spooky things this is right up your street. 

Hope everyone has a good relaxing weekend with improvements all round. 

Keep smiling x

Hi Sam

Took your advice as started to feel a bit nauseous and was so exhausted and miserable yesterday have also no appetite since chemo hope that eases, hope your ok to and are having a nice weekend

Take care

Alli x 

Morning

Feel a little bit more human today but still no appetite so that's not helping, I'm feeling pretty down and just hope I can find the strength and positivity to get through this, sorry having a bit of a wobble day. The watering can lights are a lovely idea think I could do with some lights in my garden to make it a bit more sociable. Hope your ok Al and still trying lots of different things to eat you were brave taking the tube out

Hope you have a lovely day

Alli x

Morning apologies i did not reply yesterday but spent the day in the garden.

Alli dont worry you are bound to wobble and feel down with chemo Al was the same. just try and think positive and see the good in everything find things that make you smile and remember hope there is light at the end of the tunnel that gets brighter each and every day. We are here for your wobbles every day. 

The sun was lovely yesterday i had to get outside but it took all day to do what i wanted with hubbys support. We even had coffee outside and sat outisde listening to the birds in the evening. Feel it this morning though!!! We then had tons of rain last night so i weeded one bed this morning and it was great the weeds came up easily shame cant finish the job. 

mini mafia have been sneaking around recently hubby has caught the backsides of a couple each day and there has been eveidence of their presence. the rumours are the war plans are coming to fruism and will start any day. Next door informed me she had also seen two running between our gardens. they appear to be residing under her shed and the two she saw are the scouts. 

Have left my plugs uncovered for the last couple of days to adapt now to the weather, especially as the sweetcorn and butternut squash need to be planted soon. Some of my flowers are also needing planting so exciting if they take. 

lights are definatley lovely in the fgarden they do bring something to the garden. i have adjusted my watering can and it now looks better and even managed to get it onto a laburnham branch so it hangs down nicely. Worth it and you can get some quite cheaply now. 

Hope this week goes well for you Alli and AL and Sam you continue improving. Bet Al you are feeling better with no tube now hope the eating is still ok. 

keep smiling x